title: End-of-life care policies and practices in pediatric skilled nursing facilities.
abstract: Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.
authors.affiliation: University of Colorado School of Medicine, Aurora, CO, USA Neurodevelopmental Behavioral Pediatrics, Children's Hospital Colorado, Aurora, CO, USA sandra.friedman@childrenscolorado.org.
authors.forename: Sandra L
authors.initials: SL
authors.lastname: Friedman
authors.affiliation: University of Massachusetts, Boston, MA, USA Division of Developmental Medicine, Boston Children's Hospital, Boston, MA, USA.
authors.forename: David T
authors.initials: DT
authors.lastname: Helm
authors.affiliation: Waisman Center, University of Wisconsin, Madison, WI, USA.
authors.forename: Ashley C
authors.initials: AC
authors.lastname: Woodman
mesh_terms: D000293:Adolescent; D000328:Adult; D001291:Attitude of Health Personnel; D002648:Child; D002675:Child, Preschool; D002658:Developmental Disabilities / Q000628:therapy*; D005260:Female; D006291:Health Policy; D006801:Humans; D007318:Inservice Training / Q000458:organization & administration; D008297:Male; D008875:Middle Aged; D009741:Nursing Staff, Hospital / Q000193:education / Q000523:psychology*; D010371:Pediatric Nursing / Q000592:standards*; D017410:Practice Guidelines as Topic; D016414:Resuscitation Orders / Q000523:psychology*; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000592:standards*; D014481:United States; D055815:Young Adult